For #RareDiseaseDay I want to share some info about my most recent diagnosis: Eagle's Syndrome. There are two types: classical and vascular.
In VASCULAR TYPE (which I have) the styloid process may be elongated beyond 3cm but isn't always (mine isn't), but due to anatomical variation, the styloid may still be pressing on the carotid artery or jugular vein, and often the vagus nerve, too. Often the jugular & vagus nerve are squished in between the styloid process & the c1 vertebra, as mine is. (Some people the styloid process isn't involved but instead certain over-tight muscles in the area create the same effect. Idk if that's technically ES, but it should be imo)
This can causes problems with: getting oxygenated blood into the brain (carotid) or draining the deoxygenated blood out of the brain (jugular, which needs to happen before oxygenated blood can get in there via the carotid) leading to intracranial hypertension & possible cognitive & vision impairment; tinnitus (including pulsate tinnitus); pain and discomfort around the compressed area; possible ear problems; etc. The vagus nerve compression may contribute to dysautonomia as well (including syncope).
In CLASSIC TYPE, the styloid process is elongated beyond 3cm, &/or the stylohyoid or stylomandibular ligaments are calcified.
These can then cause a lot of trouble in the throat region, including: stabbing (sometimes all the way THROUGH the throat), face and neck pain, palsy, difficulty swallowing, tinnitus, TMJ, the feeling of something being stuck in the throat, syncope, and sometimes can even dissect the carotid artery, etc. As the NIH's rare disease page says:
"About 4% of people have an elongated styloid process. However, only a small percentage of these people (between 4 and 10.3%) have symptoms. The incidence of Eagle syndrome is therefore estimated to be about 0.16% (1 in 62,500)"Â
(there is no estimates I can find on vascular type, but drs know about it even less than classical)
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Eagle's syndrome is not well known by doctors. Dentists actually seem to catch it more than anyone else. There have been a lot of people with super long styloids poking INTO their throats and still the doctors refuse to acknowledge that Eagle's can cause problems. That's a huge issue for basically everyone with any kind of #RareDisease-- doctors can be aggressively ignorant. We need more awareness so more doctors know about it, and more regular folks know about it so they can seek out ES knowledgeable doctors in the meantime!
More info:
https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome
https://radiopaedia.org/articles/eagle-syndrome?lang=us
&
Eagle Syndrome Group
Eagles Syndrome
(Also, though I haven't seen it, I hear a couple weeks ago Eagle's Syndrome was featured on Season 3, episode 14 ("Influence") of  The Good Doctor! (https://abc.com/shows/the-good-doctor/episode-guide/season-03/14-influence))
